Segawa's Dystonia: The Baby Who Changed Colours | S03 E08 | Medical Documentary | All Documentary

Brenda and Jake are delighted when their daughter Isabel is born, but their euphoria quickly turns to panic when Isabel stops eating and her skin turns grey.
The Beery twins are a healthy boy and girl until strange symptoms appear in Alexis. She retreats into a jerky fog and her mouth droops. As she gets older it gets worse and worse. Brenda and Jake are thrilled when Brenda gives birth to their first child, a baby girl, Isabel, who is diagnosed with jaundice. Over the next couple of days, Isabel stops eating, becomes more lethargic and turns an alarming grey color.
People suffering from illnesses un or misdiagnosed, discuss their journey to finding a diagnosis.
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#SegawaDystonia #MedicalDocumentary #Colours #AllDocumentary

[@ElspethSJB]

I really wish I hadnt read the comments before watching! Now literally can't stop noticing the constant eye close ups! Lol!

[@georgiabrockman4776]

I can’t rlly tell if u r joking or not, but if u aren’t, she means that she had noticed them but they weren’t rlly a big deal, like it was just more extra film, but when she read all the comments her brain automatically saw every time afterwards and would oNly notice that...

[@kaylahliam6940]

Nooooo what have I done 😭😂😂😂😭

[@GossipIsSlander]

the fact that her brain scans showed no brain damage together with her rapid improvement is kind of worse: all that time she was basically cognitively healthy - a prisoner in her own body, unable to communicate her difficulties. imagine how that would have been for her. she is one brave and strong individual!

[@carliejames7836]

She didn't know any different fortunately. Would have been terrible for the boy if there wasn't treatment.

[@NiaJustNia]

Charlie never had a missed diagnosis, he refused to go get a diagnosis when advised to, and just kept driving around knowing he couldn't see!

[@sarahdermody6665]

The Beery twins-best mystery diagnosis and outcome I've seen so far! So happy for them as a family to have found a diagnosis and treatment that totally changed their lives for the better 😍

[@sarah-annehewitt1834]

I have segawas distonia, I am also a fraternal twin like Alexis, except my twin brother has no problems. I had all the symptoms Alexis had and the same troubles diagnosing it. One doctor thought I needed a hip replacement at 6 years old 😳 I was only 1 of the 6 people in Australia at the time that had Segawas. I am grateful for the two doctors that saved my life, as well as my mum. 🤘

[@jewels3895]

I'm so Happy for Alexis and Noah

[@Ingrafre]

What a beautiful happy turning for Alexis and Noah! I'm so glad with you and the parents.

[@deelite402]

I love it when there're three cases in one episode. Score!

[@jaynedavis3388]

Charlie is lucky to not be in prison. It was massively selfish & extremely dangerous for him to drive with such impaired vision. He could have killed someone & it would be man slaughter/reckless endangerment because he *knew* he was too blind to drive safely

[@SwiftTelly20]

That's very true. Typical man, he didn't want to get it sorted until the problem got worse.

[@amandabroad6139]

Jayne Davis totally agree!!!

[@PileOfEmptyTapes]

Right?! I was *flabbergasted.* Here I am with my 20/100 vision, with no driver's license and thinking that no nation in this world would be foolish enough to give me one (otherwise my life so far would have been radically different), yet my nickname could be Eagle-Eye Cherry compared to the guy's state when he was still driving. This stuff does seem to happen once in a while. There was this Reddit story a while back about a woman coming to an optician only for them to realize that she had driven there almost blind... Scary.

[@flixart8891]

SwiftTelly20 typical man wow 😑

[@ladymunch0]

Finally! my medical condition gets some air time. Thanks for the upload. Also I hope y'all know there is absolutely no point moaning about the "eye thing" because the film-makers probably have NOTHING to do with uploading this to KZbin. if it bothers you, shut your eyes and follow along in your heads. The narrations in this programme are excellent. This is what I do every day. I am totally blind. If I can do it all my life you can all try too.

[@lisaabroad1192]

Do you have PXE?

[@realrebelli0n]

@Erica Cole I tried to close my eyes and just listen and it was very nice, so thanks for the tip, and thanks for being positive!

[@moorinaga3357]

If u are blind how did u write this?

[@ladymunch0]

Puppyroses ROBLOX I do it exactly the same as you. only I use software on my phone to read to me etc. Look up screen readers - its a fascinating subject.

[@unusunus4613]

@@moorinaga3357 You really think blind people can't use phones...

[@Sophia.P145]

I'm so glad about the outcome of the first case!

[@petalpinkton8682]

Excellent documentary. We need to be proactive with our health especially our eyes.

[@susanrawson6318]

Interesting documentary but does the film makers have an eye fetish

[@vonny10096]

He had a new Zoom button for Xmas

[@sarahshaw7205]

Susan Rawson 😂😂

[@maggiegee8351]

Really annoying but i suppose they need to fill up time in their doco

[@nanaayesha406]

Lol maybe trying to capture emotions.

[@Azariachan]

That's US doccos for you. They sure love drama. I don't watch it, just have it playing on the second screen while I'm doing other stuff, so the eyes don't bother me.

[@memsisters9994]

The first half, mother takes motherhood to a brand new level

[@ReyOfLight]

Why in the heck was Charlie driving if he couldn’t see?! Irresponsible much?!

[@szancilulu]

Isabelle's mom smiles when she is talking about something really tragic and until this very moment I really thought I was the only one with this feature... I do the exact same.. Sometimes I just smile automatically when I'm talking about something that destroys me.

[@caroldannenberg9778]

Yep, a lot of people do that. Smile so you won't cry.

[@redcadet]

5:28 im sorry but this eye panning scene is hilarious i cant stop laughing

[@aishlingpaigehanlon1571]

😂😂

[@yawnxxn]

redcadet SAME

[@softsunlightnaiad]

Hahahahhahah

[@softsunlightnaiad]

@@yawnxxn amryy

[@softsunlightnaiad]

@@yawnxxn armyyy* 🤣🤣🤣🤣💜💜💜

[@kimmills3205]

WHEN are you going to stop those ridiculous eye close-ups?

[@hypnotherapy69]

it wouldn't be mystery diagnisis without them :)

[@Dragonclone]

Thanks now it's all I can see🤣🤣🥰

[@hawaii3231]

5:27 lol. Never seen them do one like that before.

[@kellyweingart3692]

👁 👁

[@mammadingo9165]

Bit creepy.takes away from the serious nature of the topic . All the faze out and flashing they trying to give the audience seizures .

[@sabryjuarez2712]

I have Segawa dystonia too and my story is very similar to theirs. I'm from Argentina and this disease is so rare that I couldnt find any information here. It took the doctors two years to get my diagnosis, but now I take my medicine and everything is fine. It's a hereditary disease so I just hope that if one day I have kids, they won't get it.

[@AuroraButterflyx]

At least if your kids do get it then you can treat them quickly ❤

[@codyhannahmary83]

Just when you think you know a general knowledge of problems the body can be hindered by, then you watch this and find the eye story surprises you.

[@mariamyehia8173]

I love those documentaries!

[@rosejeanamosco9398]

my sister is with cerebral palsy. she is a blessing to us.. the doctor told our parents that she cannot live that longer., and she cannot survive till 20 years old. but by God's amazing grace she is now turning 40 years old this coming january 12,2021..

[@naiameyers4725]

No one: Absolutely no one: This documentary: 👁 👁

[@o0aska0o]

Lol

[@PhilaArtistry]

This video taught us the struggles of parents for their children.😞❤️

[@anshikasrivastava8409]

I had VSD too..I have undergone three surgeries..I recently had my final ECG now when I m 20 and glad to know that I'm perfectt

[@chnclrss]

The video sound is so low.. scared me when the ads is played in a much higher sound

[@greenpeas154]

I feel so happy for the family. Thanks to the doctors, they can lead a normal life.

[@rachelcookson3492]

I can’t believe the Reverend was so reckless and driving when he couldn’t see, putting others lives in danger....!

[@kimtaehyungangel5113]

They loved their daughters so much . I wish my parents would love me too .

[@fatmaabdulla700]

kimtaehyung angel I wish mine did as well. Oh well 😔

[@nadiatr8731]

Why should parents need to search for answers, why these articles are not circulated whithin the medical community, all these rare conditions should be communicated from South to North.And more information should be shared.

[@parkersimpson9308]

I had a 30 hour bus journey back from andorra to Scotland and I watch documentary after documentary on this channel and now every time I close my eyes... EYES APPEAR!

[@jehearoGaming]

I love watching these every week!

[@heat_wave5774]

The last one wasn't a medical mystery just because he didn't want to visit that retinologist doesn't mean that no one could find what was wrong with him!!!!

[@caramelcupcake1275]

Regardless, it's a rare disease, and one that I wouldn't have ever known about otherwise, so I'm glad they included his story in this video :)

[@rhiannonsaunders8650]

It doesnt matter if it wasnt a medical mystery, the video is mystery diagnosis, it's a bit different

[@heat_wave5774]

@@rhiannonsaunders8650 Alright sorry. I understand

[@rhiannonsaunders8650]

@@heat_wave5774 dont be sorry, I think what I meant to say came out really harsh so I'm sorry, I didnt mean it in a bad way

[@heat_wave5774]

@@rhiannonsaunders8650 It's ok don't worry

[@teacup8047]

I know the feeling of being lost completely, I’ve had this crippling chest pressure, pains in my underarms, numbness in my neck among many other symptoms for little over 2 months now and so far I’ve been told it was a chest infection, second and third I was told it was anxiety, I wasn’t given a single medication / help for these and sent on my way, I’d spend my nights balling my eyes out because I’m suffering and it seems like nobody understands, it gets worse everyday but I’ve become closed in and embarrassed about this, just thinking about telling a doctor about all my new symptoms crushes me, I’m just hoping I don’t pass at this point, I’ve done nothing with my life as a seventeen year old and I want to watch my younger siblings grow up, I want to do something as simple as get a job, I don’t want to deal with this anymore. I can barely deal with a few months, I can’t physically begin to comprehend how years of this suffering must feel like, you’re all so strong.

[@karenhearne7112]

Ask around,ask you parents/grandparents/uncles/aunties etc about who they would recommend Don't trust the internet. Keep going on advice from your trusted family and get a diagnosis.

[@paulacruz6239]

keep on trying, speak with doctors dont give up, some times it just takes time.. but eventualy they find out and it is a big relieve.. I have parapesia of the muscles and it took 4 years to find out.. but im glad i never gave up on trying to know and know i know how to deal with it

[@SheenazaDy]

get anMRI

[@jollynah19]

Watching these documentaries,i noticed there are alot of great doctors in michigan.

[@drfwn4273]

My day is complete now thanks to MD...Hoping you upload more 😍😍😍

[@lisa-janejarvis7021]

I love watching these programs but stop with that eye close up thing...its driving me nuts

[@yuzulemonvt]

"I see two lines instead of one" Thank you for reminding me of my eyesight, you can get used to it when you don `t know anything else lol

[@Jdjustsaying]

Why doesn’t every doctor ask, are they more able in the morning? Imagine how many kids are suffering needlessly because of a simple question.

[@riverdeep399]

I think a woman I worked with may have this. She was part of a multiple birth and her cerebral palsy got dramatically worse over the years. Along with other symptoms. I wonder how rare it is in the UK? How awful :(

[@paulacruz6239]

did you told her about this? may be she does not know

[@Jdjustsaying]

Have you sent her this show? It might change her life 💚

[@firzanafarooq6231]

I'm from the UK. My son had dystonia associated with a neurodegenerative condition due to iron accumulation which is also very rare but you can get dystonia with cerebral palsy aswell as on its own without any conditions, hope this information helps.

[@osakihamtaro]

The dramatic eye blinking is kinda annoying but it somehow makes it more exciting. This series is awesome

[@piperjaycie]

It’s not a misdiagnosis if you repeatedly refuse to seek medical help until you have no other choice. The calm whatever attitude this guy has to putting others in danger with his driving is so selfish.

[@ANDREA-rr2rv]

Thanks for the upload 👍😁

[@raquellofstedt9713]

Colic. My son had "colic". turned out it was sever ear infections from the first week after birth. he had basically no hearing until he was five. dang "colic!"

[@Dep5723]

Mothers know their babies and the fact that Drs have no idea they should just say I will look into it, instead of shrugging it off with an another non diagnosis

[@zebruh2794]

I love when parents or person use past tenses like a patient is dead or something when they are alive and after they use present tense when they recover from something

[@juliandilling2702]

He also shouldn’t be driving with eyesight like that

[@FionaKumariCampbell]

I can’t believe that he was driving!

[@avoyebad]

"him and his wife packed up his 2 children"🤣

[@noacross4903]

I have had people call CPS on me because my son cried 10+ hours a day and I'm rocking him like they did in the video. People with healthy babies don't understand and need to mind their own business

[@cooljoshpa4540]

Is this eye lens ad ???

[@siennathomas4745]

Iactually started crying when alexis took the pills and she was completely fine🥺🥺🥺😍😍

[@paul2k649]

Totally

[@JosieReddingtonDeSanta]

The first case; that is soo cool! That it worked so well, that medication!

[@jojozepofthejungle2655]

These first parents were robbed of half their children's lives and had to research their own cure, typical.

[@lesegoyv]

Doctors are something else 😂 My GP told me to go home and eat apples for 6 months then return after I asked for an advice on weight loss supplements.

[@xPandamon]

@@lesegoyv Yeah, understandable, weight loss supplements are the last thing a doctor would prescribe.

[@cloudeight3887]

Does anyone have any updates on the twins or the girl? I'm quite curious as to how they turned out

[@Alderwood]

I'm sorry but the editing between 5:20 to 5:29 is like a bad reaction/prank channel and it has me crying with laughter

[@baffledmouse]

How was the dude so calm about potentially going blind? I get not wanting to know how bad it is but if something could be done why would you wait that long and why the heck was he still driving?!!

[@Daaaanielle]

I love people moaning about the eye thing as if the people behind this are going to change something about this early 2000's show. Looool

[@deadpoetoftheyear]

I wonder where the twins are today. They worstened at 12 and had to take serotonine that was also missing and got better.

[@charlottesaabyeelmstrm9842]

Wonder why the doctors are not doing the same research as the parrets do..

[@newnewsbrooklyn1513]

L-dopa is used for parkinsons. Is the 1st case a type of parkinsons? Does the l-dopa stop working after a while like in parkinsons? This is fascinating

[@idioteza]

Not exactly. Parkinson's disease occurs when the neurons that make the dopamine die, and the L-dopa helps the few neurons that are still alive to produce more dopamine. In the twins' case the neurons are alive and well, but they are unable to produce dopamine. L-dopa just helps the neurons produce dopamine and function normally. There are a few more differences, but this is the biggest one. I agree this is really fascinating! Especially how each of the twins developed the symptoms at different times, even thought they both had the same disease.

[@inciMoawad]

It's also given when you suffer from rest less legs syndrome. I took it for years till it got worse by it (rebound effect)

[@sluvvr]

Oh, interesting

[@BT-km7nl]

@@idioteza very well explained.

[@juicylucy6488]

I thought colic was when a baby can’t pass wind ? So the baby is left very uncomfortable and cries/screams ?

[@noacross4903]

They think so but no one knows what causes colic

[@m.p.9931]

It can cause that, colics are just very heavy belly cramps

[@tessalangfermann3766]

Can only think about horses when I hear/read the word colic 😂 (our hores had this quite often)

[@easiestpeasiet]

Tessa Langfermann same I was like, “ a twist in the intestines seems pretty serious” for a while there

[@carliejames7836]

There a heaps of different theories on colic. There are possibly different causes. One is that at the end of the day when colic symptoms seem to become troublesome that it is due to the baby having trouble with being overstimulated. All the patting, rocking, bouncing etc can make it worse or atleast hit make it better. I had it with a 5.6 pounder that would poset a lot & had tongue tie, I also had it with a 9 pounder which didn't seem to ahve an digestive issues but now likely has adhd & autism/aspergers. I feel my little one was die to tummy troubles & my big one was for to overstimulation.

[@fly2174]

Am I the only one that doesn’t even notice the eye thing everyone is talking about in the comments??

[@worldwide123]

Nana Sol yes you are

[@gem2148]

I wouldn't notice it if people didn't mention it tbh

[@myrillya]

What? 😂 I’ve noticed it immediately and had a look into the comments to see if I’m the only one 😂

[@elleyonaspg9580]

Am surprised as well. What are they talkong about? Am wondering whether they are watching the same video as I am. Most of the comments are not in sync. Also title of the video is inappropriate.

[@bellashaughnessy5852]

22:32 why was the mother smiling when she was telling us that her newborn child had heart failure?! concern increases...

[@wendillon92]

Lots of people smile when they're trying not to cry.

[@doctormanzoor4834]

did any body else find retta berry as priness diana.

[@Akaruiumi31nihon]

The twins story was the first one that led me to investigate further into DRD. It turns out I have it too. The other story that helped put the pieces together was that of Jean Abbot

[@Jdjustsaying]

Wow, I hope life is much better for you now.

[@Alvarnea]

Im sorry but. That one sound effect they keep using. Like at 33:25 and 33:48 for example. Isn't that. From Assassin's Creed?

[@deniserowley8549]

My twin was diagnosed with cerebral palsy but it was chiari malformation

[@nurulfadilah1028]

Can you gimme subtitle or English text?

[@drstew1]

Considering we live on a planet with about 7 .5 billion people. It’s incredible how much attention we give just one. If we can do that, surely we can do much better with everything...

[@lindacross1920]

I didnt notice anyone changing colour.

[@laura-louisehodgman1712]

Right???

[@hollycrawford323]

the baby had jaundice which is yellow skin usually bc of liver problems

[@biaberg3448]

In some countries people run to a doctor when they have one cough, but in the US they wait weeks and weeks even when small children are sick.

[@trippelleasmr8650]

Whats up with 5:28 😂

[@aishlingpaigehanlon1571]

Hahaha 😂😂

[@osakihamtaro]

I couldn't stop laughing 🤣🤣🤣

[@MultiMolly21]

From the start of this it strikes me that little is said about diet; digestion of essential nourishment for normal development. They seemed content the kids were gaining weight; but vomiting every day? Basically the kids are starving to death. The needed formulas made up for them.

[@karenembury6467]

Some awful comment . So glad my children didn’t have to face the American medical system in this way and for so long .

[@naimajama3182]

The first story woow

[@dianekerrison9693]

Why the music spoils the story

[@cooljoshpa4540]

I liked the zooming in and closin the eyes...

[@tommysdreamhamilton3216]

The flippin EYESSSSSSSS EYESSSSSS GRRRRRRRH

[@saadyaghias5014]

What's with the eye closeups??

[@GhostLightPhilosophy]

11:48 Who is Joanna Chejade Bloom?

[@shriyapanda2965]

Well,you know what they say The eyes are the window to the soul

[@BekZ77]

Wish the producer would stop zooming in on the parents eyes. It’s creepy!

[@hardcoreml7104]

I think my sister has segawa's dystonia. But she's 21 years now.

[@strawbxrry2042]

Bruh we don’t need to see everyone’s eyes a thousand times😑 and the dramatic blinking imma go blind soon😑😑😑😑smh🤦🏼‍♀️

[@djjasperfox2194]

I went orange as a toddler from drinking too much apricot juice.

[@DutchMelon]

Lol I got slightly orange bc I ate too many carrots

[@makatusaumwe1663]

I have epilepsy so I know what it feels like to have seizures.

[@taniawoodhouse6210]

Me too

[@taniawoodhouse6210]

@Grace Pedder awful

[@makatusaumwe1663]

@@taniawoodhouse6210 I know right? I find it hard sometimes to cope with the limitations I have like driving because I have not even got my learner's licence and I also have an eye condition. I try to stay positive but it isn't easy for me.

[@taniawoodhouse6210]

@@makatusaumwe1663 I have to be sezuire free for a couple of years till I can learn to drive but I can get a free bus pass though

[@taniawoodhouse6210]

The fact is I don't know what causes mine so even if I was sezuire free for a couple of years I still wouldn't feel safe driving

[@moon-xf1il]

i really cried bcoz even wen am child i was about to die but my mom dad suffered alot to get me back to life and am less talented bcoz of my lots of medical treatment but myself am fine😭😢

[@Moonlight-kt3lw]

What happend to you?!!! 😱

[@mirachowdh7430]

You r clearly talented.just don't down yourself

[@picklespip9213]

The second one seemed to get a diagnosis very quickly

[@laurananderson4473]

And thank goodness otherwise the baby would have died.

[@Jdjustsaying]

Colic literally means 'crying baby'. It's not a diagnosis. It's doctors saying 'I don't know '. So ask another doctor.

[@Jdjustsaying]

100%

[@fikent5252]

No it doesn’t colic is trapped wind in the stomach/bowel it’s very painful for baby & giving colic drops help bring up the wind !!!!

[@abigrant7194]

I was jaundiced like this and I was in an incubator with dark glasses on

[@alisonshanahan1237]

My dad had a bleed in his eye, the optometric advised him that it would self correct. A year later he saw a specialist who said it was too late, he was blind in that eye. If dad had seen the specialist asap, he would have saved his sight. The specialist was very angry.

[@niamh8055]

So are we just not gonna mention that the last doctor's name is Stephen Schwartz? 😂

[@Jolenesmart1980]

Didnt they cry non stop in the hospital before they took them home????noah and Alexis I mean

[@Cp-71]

Anyone is bothered that the title is inaccurate?

[@racheybrowne9213]

I noticed the eye close ups then read the comments! Some were a bit cringe worthy!

[@totukimou]

26:43 the doctor examines a doll!

[@tora7770]

Why did they think the brother and sister had the same thing anyway? They're twins, but not IDENTICAL twins

[@anyalouw5395]

Because the problem is genetic.

[@tora7770]

Anya Louw so? One of the siblings can have a genetic illness without the other having it as well

[@boldanabrasevic3020]

@@anyalouw5395 Cerebral palsy actually isn't genetic, so it doesn't matter if they're identical or not

[@mb6194]

The grandmother in the second story looks very young

[@shrimp5499]

YEEEEEEEES, FINALLY!

[@GlennDavey]

this documentary is like 20 years old. check out the intro music. and it's not widescreen, they cropped it for youtube. you know it looks worse like this, don't you Reel Truth Documentaries?